#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where pts, care partners & advocates come to learn from each other & discuss topics of interest to empowered pts |
 | Kimberly Amelia @fireflyrn84 @patientchat Is anyone else having problems with #patientchat hashtag not updating for the chat? |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself #patientchat |
 | Salem Oaks @SalemOaks Welcome to #patientchat. This is Kevin from Salem Oaks. We are really looking forward to your input and thoughts during today's chat. You can learn more about us at https://t.co/XAdIrXcKCI @H_SalemOaks @JamieRoger8 |
 | Patient Empowerment Network @power4patients RT @patientchat: Welcome to #patientchat - where pts, care partners & advocates come to learn from each other & discuss topics of interest to empowered pts |
| Patient Chat @patientchat Excited to have guest @SalemOaks, who is dedicated to empowering patients to shape the future of medicine, co-hosting today’s #patientchat |
 | Jamie Roger @JamieRoger8 Can't wait to hear the thought provoking dialogue led by @SalemOaks !!! #patientchat #patientengagement |
| Patient Chat @patientchat You can find out more about @SalemOaks and their mission here: https://t.co/vkb7Y8y7LT #patientchat |
 | Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 Are we starting #patientchat ? https://t.co/jZF1oxZYwI |
 | Alan Brewington @abrewi3010 Yes #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat |
| Jamie Roger @JamieRoger8 Jamie here, from @salemoaks Welcome everyone! #patientchat #patientengagement |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 @patientchat Are we starting #patientchat ? |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Heather McCullen @H_SalemOaks Hi, Heather from @SalemOaks here. Excited to hear what everyone has to say. #patientchat https://t.co/RneONu7j7a |
| Salem Oaks @SalemOaks It is snowing here in Connecticut. What's it like where you are? #patientchat |
 | Your GPS Doc, LLC @yourgpsdoc Nicole Rochester, physician, former caregiver, patient/caregiver advocate, and Founder/CEO of @yourgpsdoc. Hi everyone! #patientchat https://t.co/KrkH5EXqFB |
| Patient Chat @patientchat Today's chat is solely informational & not a substitute for speaking w/ a doc who's familiar w/ your medical needs and history #patientchat |
| Kimberly Amelia @fireflyrn84 I just switched browsers. Chrome seems to be working okay #patientchat |
 | Geeky Fox @TechKitsune Hi! I'm geeky fox! I work in healthcare IT! #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 I was looking forward to #patientchat but I guess it is not happening |
 | Richard Zhao @richardzhao Hello from Minneapolis with 20 degree today and very windy. This is Richard. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: You can find out more about @SalemOaks and their mission here: You can find out more about @SalemOaks and their mission here: https://t.co/vkb7Y8y7LT #patientchat |
 | Barby Ingle Official @BarbyIngle @patientchat I'm @BarbyIngle, coming to today's #patientchat from Phoenix, AZ. I am the Pres of @powerofpain, Editor-In-Chief of @iPainFoundation, #cheerleaderofHOPE, author on chronic pain topics, and 20+ year thick case file patient. |
| Jamie Roger @JamieRoger8 @yourgpsdoc Welcome, so glad to have you here for the discussion @salemoaks #patientchat |
| Kimberly Amelia @fireflyrn84 @angelee828 @patientchat Hey there! #patientchat |
| Salem Oaks @SalemOaks @richardzhao Welcome to the party! #patientchat #drugdevelopment #pharma #patienteducation |
 | Annette McKinnon @anetto Was at #ctocon18 last week. Talking about innovation, ethics. #patientengagement #patientchat |
| Patient Empowerment Network @power4patients @gratefull080504 Hi Kevin, #patientchat is happening. Hope you can join us. |
 | Mary MACK @MaryOCMack Hello, I am Mary a patient and advocate for the Laminopathies #patientchat |
| Jamie Roger @JamieRoger8 @gratefull080504 It is happening, trying switching to chrome, someone else was having the same issue. @salemoaks #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, Earthlings. Casey Q here, #openscience #opendata warrior, #science + #healthliteracy writer, podcast producer. #patientchat |
| Salem Oaks @SalemOaks @gratefull080504 Yes it is. Try switching your browser. #patientchat @patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94 |
| Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94 |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Kimberly Amelia @fireflyrn84 I'm Kim, coming from Wisconsin. #raredisease #chronicillness #healthcareexperience advocate. RN turned full time patient. Also blogger. Looking forward to today! #patientchat |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 #patientchat I am @gratefull080504 President, the Voice of the Patient, #kidneytransplant recipient Will be here for 30 minutes |
| Jamie Roger @JamieRoger8 @richardzhao So glad to have you for the discussion! @salemoaks #patientchat |
| Alan Brewington @abrewi3010 Alan here. I’m a #rheum #chronicpain #mentalhealth patient storyteller who might lose the use of my hands today due to pain. #patientchat |
| Kimberly Amelia @fireflyrn84 @BarbyIngle @patientchat @powerofpain @iPainFoundation Hey Barby! #patientchat |
| Jamie Roger @JamieRoger8 @BarbyIngle @patientchat @powerofpain @iPainFoundation Glad to have you here for the chat today! @salemoaks #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SalemOaks 55 here in Maryland. #patientchat |
 | Lisa Davis Budzinski @lisadbudzinski Hi everyone! Lisa here from Florida. Co-founder @Cpnervecenter Patient & Advocate for #IntractablePain & #PatientPerspective #patientchat |
| Jamie Roger @JamieRoger8 @fireflyrn84 @angelee828 @patientchat glad to have you here for the chat today! @salemoaks #patientchat |
| Patient Chat @patientchat T1: What are some of the barriers of patient involvement in research and development? #patientchat |
| Annette McKinnon @anetto @SalemOaks Snowing in Toronto too. The poor snowdrops. #patientchat https://t.co/CZuqHO5wVP |
| Lisa Davis Budzinski @lisadbudzinski RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94 |
| Richard Zhao @richardzhao @JamieRoger8 @SalemOaks Thanks for the invitation. #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody @Cpnervecenter Hi Becky! #patientchat |
| Patient Empowerment Network @power4patients @SalemOaks It's cold and snowy here in Boulder, CO #patientchat |
| Alan Brewington @abrewi3010 @bbhomebody @Cpnervecenter Hey 👋 #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 Hey Alan! Good to "see" you! #patientchat |
| Jamie Roger @JamieRoger8 @MaryOCMack So glad to have you here for the discussion! @salemoaks #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @patientchat: Today's #patientchat topic is Are We Missing the Mark with Patient Involvement? https://t.co/bCP55yeP94 |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What are some of the barriers of patient involvement in research and development? #patientchat |
| Jamie Roger @JamieRoger8 @MightyCasey Glad to have you here for the discussion today! @salemoaks #patientchat |
| Kimberly Amelia @fireflyrn84 @lisadbudzinski Hey you!!! #patientchat |
 | Vera Rulon FAHIMA @vrulon #patientchat Vera here from New York. Glad to join the chat today! |
| Salem Oaks @SalemOaks A1: Just like patients find it hard to find clinical trials, companies find it hard to find patients who are prepared to be more involved. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ZlYDUOaLcH |
| Geeky Fox @TechKitsune Q1: Mistakes being made on instructions. Possibly leading to not clear enough data when needed. #patientchat |
| Jamie Roger @JamieRoger8 @gratefull080504 so glad you got this working, glad to have you here! @salemoaks #patientchat |
 | Beth Morton @beth_morton Hello everyone! Beth, coming to you from Vermont where it is snowing AGAIN!! #patientchat |
| Alan Brewington @abrewi3010 @fireflyrn84 Hi, good to see you too! #patientchat |
| Mary MACK @MaryOCMack T1 A major barrier is culture. General lack of respect for patients and an unfair expectation of pure altruism. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc T1: Lack of trust, especially among minority communities. #patientchat https://t.co/kJcZaG44tq |
| Heather McCullen @H_SalemOaks Not bad today in Ann Arbor. Bright and sunny! #patientchat |
 | Angela Cohen @angelee828 Hey all! 👋🏽 Angela here from Wisconsin #patientchat |
| Salem Oaks @SalemOaks So you are saying there are barriers going both ways? #patientchat https://t.co/c4l3fTDm2A |
| Alan Brewington @abrewi3010 @bbhomebody @Cpnervecenter 🙏🙏🙏 #patientchat |
| Annette McKinnon @anetto A1. Feel that pharma companies have own agendas. Patient insights are saved for marketing. #patientchat |
| Salem Oaks @SalemOaks Hello, thanks for coming #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uLWwL97gfI |
| Barby Ingle Official @BarbyIngle T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| Richard Zhao @richardzhao A1: for our #PatientSentiment project, it is difficult to find enough committed #volunteers like folks in the #PatientChat group. |
 | Amanda G @LAlupusLady Friday fun’s continues as I multitask thru #patientchat Hugs to all. |
| Annette McKinnon @anetto RT @MaryOCMack: T1 A major barrier is culture. General lack of respect for patients and an unfair expectation of pure altruism. #patientchat |
| Kimberly Amelia @fireflyrn84 T1: time constraints, health condition flares, costs and overall effect on the patient—sorry if this sounds goofy, my brain isn’t functioning very good today. #patientchat |
| Jamie Roger @JamieRoger8 A1: Not believing that they are heard or valued. @salemoaks #patientchat https://t.co/ffBMoN7sNH |
| Kimberly Amelia @fireflyrn84 @angelee828 We've pretty much been on every chat together! #patientchat |
 | Inspire @InspireIsHealth Hi all Eric from Inspire here, happy to join #patientchat today! |
| Alan Brewington @abrewi3010 T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat |
| Amanda G @LAlupusLady RT @patientchat: T1: T1: What are some of the barriers of patient involvement in research and development? #patientchat |
| Heather McCullen @H_SalemOaks RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| Salem Oaks @SalemOaks I agree they have their own agendas. The trick is to influence those agendas. Any ideas? #patientchat https://t.co/cyaPL0lQKM |
| Kimberly Amelia @fireflyrn84 @beth_morton Hi Beth! Snow here too off and on! #patientchat |
| Annette McKinnon @anetto It’s hard for patients to have a say in what gets researched, how the trial iS. cnstructed, even the consent forms. Read a very bad one today. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey This just in from The Sunlight Is Best Disinfectant Desk: @KHNews #datajournalism project on astro-turfing of patient advocacy orgs. Your take, @SalemOaks ? #patientchat |
| Amanda G @LAlupusLady @patientchat @power4patients A1 many Health I T designers don’t consider the patient during development #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/bCP55yeP94 #patientchat |
 | Kevin Freiert @K_SalemOaks Spell Check #patientchat https://t.co/5Endhm3hOK |
| Barby Ingle Official @BarbyIngle Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il |
| Kimberly Amelia @fireflyrn84 Totally agree, it seems that patients are used to make the product look good. It isn’t the pharma reps or execs on the ads, it’s patients or actors #patientchat https://t.co/QBcWjEkyCt |
 | Ken Taylor, RPIC @KenRayTaylor T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.co/0GKzVknT99 |
| Salem Oaks @SalemOaks Welcome. Thanks for the energy! #patientchat https://t.co/eanyVUeDwV |
| Kevin J. Fowler Principal The Voice of the Patient @gratefull080504 T1: The biggest barrier is paternalism + ego Giving up control is scary for a lot of organizations #patientchat https://t.co/MLVQ7mbgYe |
| Patient Chat @patientchat T2: What perceptions do you have about the role of patients in medicine development? #patientchat |
| Beth Morton @beth_morton T1: I guess, knowing where/how to start! I'm a trained social scientist/full-time patient who would love to use my knowledge to help inform R&D, but so far, haven't made any inroads. #patientchat |
| Vera Rulon FAHIMA @vrulon @BarbyIngle T1: That's true (re: Regulatory, Legal implications) and sometimes internal practices that overly bureaucratic that don't need to be get in the way. #patientchat |
| Amanda G @LAlupusLady @patientchat @power4patients A1 Patients are people first, and the tech team often forgets that. #patientchat |
| Heather McCullen @H_SalemOaks A1 this seems to be a theme. There doesn’t appear to be a trusting or equal relationship between researchers and patients. #patientchat https://t.co/I1nxOeFKCc |
| Jamie Roger @JamieRoger8 Yes, if they thought ahead as to what the patient's interests and understanding were, the literacy could be targeted to be more understandable for everyone. @salemoaks #patientchat https://t.co/hCUVIC3pM7 |
| Kimberly Amelia @fireflyrn84 @richardzhao Hi Richard! How is the project coming along? Hope all is well in the Twin Cities. #patientchat |
| Amanda G @LAlupusLady RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat |
| Salem Oaks @SalemOaks A1: Pharma companies are not used to reaching out to patients for advice. This is a big change and requires senior management will to push it through. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/MHXeV2hc3A |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: extremely tight patient "qualification" criteria. Was just talking to #t1d person today who would love to be in a trial/study, but "newly dx-ed" and tight a1C criteria are barriers in research projects she's been invited to check out. #patientchat |
| Kimberly Amelia @fireflyrn84 @angelee828 That would be pretty awesome! #patientchat |
| Salem Oaks @SalemOaks That's interesting, Can you tell me more? #patientchat #drugdevelopment #pharma #patienteducation https://t.co/iLwL6qsAUx |
| Amanda G @LAlupusLady RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| Vera Rulon FAHIMA @vrulon @LAlupusLady @patientchat @power4patients T1: This is so true. I often heard "we know what they want"!!! #patientchat |
| Annette McKinnon @anetto @SalemOaks It’s easier for patients to get involved on Patient Oriented Research #POR than in clinical trials #patientchat |
| Salem Oaks @SalemOaks A1: It is very hard for patients to know when to approach a company, which one to approach, and what to offer. Neither academic nor industry R&D are very open to observers. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/grIvYHfG7O |
| Amanda G @LAlupusLady RT @vrulon: @LAlupusLady @patientchat @power4patients T1: @LAlupusLady @patientchat @power4patients T1: This is so true. I often heard "we know what they want"!!! #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody expenses for travel are huge! #patientchat |
| Heather McCullen @H_SalemOaks @anetto Agreed, especially on what gets researched. What other industry doesn’t ask their customers before investing in product development #patientchat |
| Patient Empowerment Network @power4patients T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat |
| Amanda G @LAlupusLady RT @vrulon: #patientchat Vera here from New York. Glad to join the chat today! |
 | PatientOrator @PatientOrator @LAlupusLady @patientchat @power4patients T:1 agreeing with @LAlupusLady all the way! Many times IT designers don't have lived experience to incorporate patient perspectives during the development process, hence barriers..... #patientchat |
| Amanda G @LAlupusLady RT @PatientOrator: @LAlupusLady @patientchat @power4patients T:1 agreeing with @LAlupusLady all the way! Many times IT designers don't have lived experience to incorporate patient perspectives during the development process, hence barriers..... #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @power4patients: T1: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat |
| Salem Oaks @SalemOaks Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uo5X5XyrVj |
| Amanda G @LAlupusLady RT @patientchat: T2: T2: What perceptions do you have about the role of patients in medicine development? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: T1: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat |
| Jamie Roger @JamieRoger8 Don't we all struggle at times with knowing where to start. #patientchat @H_SalemOaks https://t.co/7TRHVS8v9n |
| Salem Oaks @SalemOaks A1: Most patients are at a disadvantage due to the language of R&D, the massive education of researchers, unfamiliarity with the process, and, in some cases, their day-to-day condition. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ZnKDfXGOl2 |
| Amanda G @LAlupusLady @patientchat A2 as a person living w/ chronic conditions my role is that of patient, caregiver and Health Records Manager... multiple roles to achieve full ROM and a decent QOL. #patientchat |
| Heather McCullen @H_SalemOaks @QuinlanTurner @patientchat Patients should be included in the entire process, but it seems especially unfair when they aren’t included in the conclusion. They’ve already given their time, it’s crazy to think they might never learn how they contributed. #patientchat |
| Kimberly Amelia @fireflyrn84 @bbhomebody It is, especially if we're unable to work because of illnesses. Nobody is offering full ride scholarships to anything. #patientchat |
| Geeky Fox @TechKitsune T2: It is necessary. Most of medical has been about trial and error. And for someone who might want to try an alternative they should have the option. Sometimes it has proven to work! Sometimes we find we might need to look and fix. #patientchat |
| Amanda G @LAlupusLady RT @SalemOaks: Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uo5X5XyrVj |
 | Heidi Grabenstatter @PatientIntv T1: Opportunities are not created for patients/care partners to co-design research projects or participate in grant review often enough. Provide more opportunities for the patients and care partners to share what outcomes are important to them. #patientchat https://t.co/S4Ov7gTsC3 |
| Kimberly Amelia @fireflyrn84 @richardzhao Sounds good! Hope things are going well and settling down. #patientchat |
| Amanda G @LAlupusLady RT @SalemOaks: A1: A1: It is very hard for patients to know when to approach a company, which one to approach, and what to offer. Neither academic nor industry R&D are very open to observers. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/grIvYHfG7O |
| Patient Empowerment Network @power4patients T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat |
| Barby Ingle Official @BarbyIngle T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| Jamie Roger @JamieRoger8 RT @SalemOaks: Get to know more people in pharma R&D. They are people too. (Shhhhh!) Build relationships and then talk about concerns. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/uo5X5XyrVj |
| Salem Oaks @SalemOaks Agree. Just like patients find it hard to find clinical trials, companies find it hard to find patients who are prepared to be more involved. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ofoc8Z8ueo |
| Ken Taylor, RPIC @KenRayTaylor T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| Vera Rulon FAHIMA @vrulon @bbhomebody @fireflyrn84 I have seen some improvement (but not nearly enough). When I worked at a pharma co there was a patient member of the bioethics committee w/all travel taken care of. As well, there were beginnings of patient participation on innovation workshops: stipends & travel #patientchat |
| Jamie Roger @JamieRoger8 RT @H_SalemOaks: @QuinlanTurner @patientchat Patients should be included in the entire process, but it seems especially unfair when they aren’t included in the conclusion. They’ve already given their time, it’s crazy to think they might never learn how they contributed. #patientchat |
| Salem Oaks @SalemOaks Just before I left big pharma last year, we were starting to talk seriously about inviting patients to the earliest Research Teams and discussions. This is a big shift. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/cnqYZgNIaC |
| Angela Cohen @angelee828 @patientchat T1: IMO, there is still some disconnect (development side) in trusting a patient’s knowledge base of research and what is needed at times. research (as a whole) not enough diversity bc still misinfo abt it in and of itself. Need more awareness/trust overall #patientchat |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| Patient Chat @patientchat RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T1: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.co/0GKzVknT99 |
| PatientOrator @PatientOrator Screaming loudly, YES! YES! YES! to be truly patient inclusive and engage #patient perspective researchers must consider factors such as cost and physical limitations. #patientchat https://t.co/4JcXjj8y9v |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| Your GPS Doc, LLC @yourgpsdoc A2: Patients are not included enough, not just in medicine development but in all aspects of research and development. #patientchat https://t.co/D7KCH9p7zL |
| Patient Chat @patientchat Topic 3 (T3:) coming up...https://t.co/bCP55yeP94 #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat |
| Alan Brewington @abrewi3010 T2 I think there is still confusion as to patient involvement. Healthcare is starting to bring us in to solve some problems. They don’t bring us in to design to promote positives #patientchat |
| Kimberly Amelia @fireflyrn84 T2: patients are involved in the clinical trial stages, but never know if placebo or the real deal. Drug development is a complicated process and patients need to be involved at every level. There needs to be an advisory panel with us on it. #patientchat |
| Heather McCullen @H_SalemOaks Challenges in #POR would be a great topic for a future #patientchat. @patientchat https://t.co/upm1uHD4dd |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il |
| Lisa Davis Budzinski @lisadbudzinski @power4patients @JackMAiello Love this article! Our #PatientPerspective is very valuable in every facet of #healthcare. We have a vast amount of knowledge #patientchat |
| Patient Chat @patientchat T3: What perceptions do you have about the time it takes to develop a new treatment? #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @power4patients: T1: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What perceptions do you have about the time it takes to develop a new treatment? #patientchat |
| Mary MACK @MaryOCMack T2. Patients are taking the bigger risk #patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T1: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.co/0GKzVknT99 |
| Salem Oaks @SalemOaks Given the chance, patients could bring a world of influence based on their expertise in the disease. But individually, they don't have much of a chance of turning the aircraft carrier of pharma. Organization will help make a difference. #patientchat #patienteducation https://t.co/jXQ79thur4 |
| Heidi Grabenstatter @PatientIntv @SalemOaks This is true of other funding agencies as well. We discuss incentives, but they are different for every individual. I would love to explore how we could better encourage the full spectrum of patients to participate. #patientchat |
| Kimberly Amelia @fireflyrn84 @vrulon @bbhomebody It's good to hear that there is change taking place within some companies. Hopefully it will become an across the board change. #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| Angela Cohen @angelee828 @bbhomebody I agree! There are times I want to go to things and can’t afford to. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @PatientIntv: T1: T1: Opportunities are not created for patients/care partners to co-design research projects or participate in grant review often enough. Provide more opportunities for the patients and care partners to share what outcomes are important to them. #patientchat https://t.co/S4Ov7gTsC3 |
| Heather McCullen @H_SalemOaks RT @SalemOaks: A1: A1: Most patients are at a disadvantage due to the language of R&D, the massive education of researchers, unfamiliarity with the process, and, in some cases, their day-to-day condition. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/ZnKDfXGOl2 |
 | Dr. Kelly Shanahan @stage4kelly T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design. We know what's important to us in terms of outcomes and side effects. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @power4patients: T2: T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat |
| Alan Brewington @abrewi3010 RT @power4patients: @abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat |
| Barby Ingle Official @BarbyIngle T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| Heather McCullen @H_SalemOaks RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| Angela Cohen @angelee828 RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| Amanda G @LAlupusLady RT @power4patients: @abrewi3010 We agree 100% and have made it our mission to improve #healthliteracy together with all of you #patientchat |
| Amanda G @LAlupusLady RT @vrulon: @bbhomebody @fireflyrn84 I have seen some improvement (but not nearly enough). When I worked at a pharma co there was a patient member of the bioethics committee w/all travel taken care of. As well, there were beginnings of patient participation on innovation workshops: stipends & travel #patientchat |
| Salem Oaks @SalemOaks Many companies are looking toward Patient Advisory Panels. Its a start. For more talk to @HealthiVibe #patientchat #patienteducation https://t.co/I8xNt9HeA0 |
| Mary MACK @MaryOCMack T3. It takes a very long time. Perhaps 5 to 10 years? With orphan indications, maybe less time #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to come to final stages. #patientchat https://t.co/RUDnBaldpM |
 | Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: T1: T1: There are lots of barriers but we need to work together to help support "Patient Scientists" Read what our own @JackMAiello has to say https://t.co/8fAEs3HCkC #patientchat |
| Dr. Kelly Shanahan @stage4kelly @QuinlanTurner @SalemOaks Yet patients are the best judge of which outcomes are important to us in which side effects we'll tolerate. We should be included in every stage of trial design and implementation.#patientchat |
| Alan Brewington @abrewi3010 @power4patients #healthliteracy & #engagement are the same in that their a continuous learning process #patientchat |
| Angela Cohen @angelee828 @BarbyIngle So true. The educated and understanding their disease part is vital! #patientchat |
| Kimberly Amelia @fireflyrn84 T3: Time for development of new treatments seems like it takes FOREVER! But, knowing the steps that must be taken to even get to clinical trials and then through the #FDA approval process is complicated. Some treatments are fast tracked and more need to be #patientchat |
 | Plavi Jain Mittal @PlaviJM RT @power4patients: T2: T2: Nothing about us without us, right??? https://t.co/E55gzwHVJO @JBBC #patientchat |
| Salem Oaks @SalemOaks A3: It is too long - but it is not like anyone is just sitting on their hands. It takes so long because there is so much to learn about a molecule before it can be called a medicine. That learning takes work. #patientchat #drugdevelopment #pharma #patienteducation |
| Your GPS Doc, LLC @yourgpsdoc A3: It takes a LONG time. Lots of trials and phases... #patientchat https://t.co/p1KKof2aUY |
| Kimberly Amelia @fireflyrn84 @PatientIntv @SalemOaks Great idea, Heidi! #patientchat |
| Amanda G @LAlupusLady A3 after the #LupusPFDD have empathy and a timeline for FDA and researchers in developing new treatments. Eons... #patientchat https://t.co/kM7Z7gbuSO |
| Heather McCullen @H_SalemOaks @angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”. Patients are smart, some of them have a research background, all of them have lived experience. And their opinions are valid. #patientchat |
| Alan Brewington @abrewi3010 T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Working from the library today to focus on some writing deadlines without office distractions. BUT... I just stumbled upon the last half of #patientchat so I just may call this research and go with it. |
| Patient Empowerment Network @power4patients @abrewi3010 Agree they are both continuous but you can't have meaningful #engagement without first have some level of #healthliteracy #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T2 IMHO meds are developed for patients. We are the end users. Why not learn from the patients start to finish. We’ve been living with our conditions 24/7 It could help tremendously in #PrecisionMedicine #patientchat https://t.co/4iLazxjq5I |
| Inspire @InspireIsHealth RT @abrewi3010: T2 I think there is still confusion as to patient involvement. Healthcare is starting to bring us in to solve some problems. They don’t bring us in to design to promote positives #patientchat |
| Heather McCullen @H_SalemOaks RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat |
| Alan Brewington @abrewi3010 RT @power4patients: @abrewi3010 Agree they are both continuous but you can't have meaningful #engagement without first have some level of #healthliteracy #patientchat |
| Kimberly Amelia @fireflyrn84 Patients must understand their diseases before they can effectively contribute. That isn’t saying that patients are excluded, but the screening process needs to be stringent and potentially education before starting. #patientchat https://t.co/EXqmDmJ6zl |
| Inspire @InspireIsHealth RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| Heather McCullen @H_SalemOaks RT @LAlupusLady: A3 after the #LupusPFDD have empathy and a timeline for FDA and researchers in developing new treatments. Eons... #patientchat https://t.co/kM7Z7gbuSO |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/bCP55yeP94 #patientchat |
| Salem Oaks @SalemOaks That's interesting, Can you tell me more? I have been there and QOL is only talked about well into Phase 3...too late. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/yhgNeEFoKX |
| Jamie Roger @JamieRoger8 @QuinlanTurner @patientchat that right there is why your voice is so important, and getting your story heard. Patients are invaluable when it comes to real life awareness as to what the medications do to you. @salemoaks #patientchat #patientengagement |
| Vera Rulon FAHIMA @vrulon @patientchat T3: It takes too long - yet we want anything new to be safe. If the right people are involved (including patients/caregivers) to ensure effectiveness & safety then perhaps we can pare down the time it takes? That & streamline/make transparent the process. #patientchat |
| Alan Brewington @abrewi3010 @power4patients Good point!!! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake A1 Yes! And who knows better than the one who is having the experience? #patientchat https://t.co/M57V6PaEdx |
| PatientOrator @PatientOrator T2: Patients should play the key role in medicine development. First, cost affects who has access to the medicine once its been developed. Second, regulations has to be revised to be pro patient rather than pro #BigPharma Third, be #PatientsIncluded in development #patientchat https://t.co/ifTsSVViWL |
| Geeky Fox @TechKitsune T3: I think medicine is sometimes given very little time or too much time spent on regulations that might not be needed to push the button to develop new treatments. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: You're invited! Join the "Are We Missing the Mark with Patient Involvement?" #patientchat w/guest @SalemOaks Fri 4/6 1pmET https://t.co/P9BRj0xwiW https://t.co/IZX4HQq0kh |
| Kimberly Amelia @fireflyrn84 Exactly! There are so many of us with skills and backgrounds that aren’t ever taken into account. Let us utilize those skills and contribute. #patientchat https://t.co/UsoidEvEYr |
| Patient Chat @patientchat T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which treatments are being studied? Why? #patientchat |
| Beth Morton @beth_morton RT @H_SalemOaks: @angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”. Patients are smart, some of them have a research background, all of them have lived experience. And their opinions are valid. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc @SalemOaks I agree! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: Which presents the biggest opportunity for involvement: T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which treatments are being studied? Why? #patientchat |
 | Marcela Musgrove @marcela Joining in late from snowy Massachusetts! #patientchat |
| Kimberly Amelia @fireflyrn84 RT @H_SalemOaks: @angelee828 @patientchat This feels like an extension of the idea that patients can’t possibly be informed by “Dr. Google”. Patients are smart, some of them have a research background, all of them have lived experience. And their opinions are valid. #patientchat |
| Jamie Roger @JamieRoger8 RT @lisadbudzinski: T2 IMHO meds are developed for patients. We are the end users. Why not learn from the patients start to finish. We’ve been living with our conditions 24/7 It could help tremendously in #PrecisionMedicine #patientchat https://t.co/4iLazxjq5I |
| Dr. Kelly Shanahan @stage4kelly RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat |
| Annette McKinnon @anetto RT @stage4kelly: @QuinlanTurner @SalemOaks Yet patients are the best judge of which outcomes are important to us in which side effects we'll tolerate. We should be included in every stage of trial design and implementation.#patientchat |
| Vera Rulon FAHIMA @vrulon @abrewi3010 Yes!!! Agree!!! #patientchat |
| Vera Rulon FAHIMA @vrulon RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat |
| Salem Oaks @SalemOaks While the regulators do insist on some process, they are not as big a hurdle as people think. Their job is really hard. Imagine having 400,000 pp land on your desk and having to determine, "Is this really a medicine?" #patientchat #drugdevelopment #pharma #patienteducation https://t.co/YxUEHY0irK |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so important to bring all the stakeholders in from the get go and collaborate on the structure #patientchat #OneSizeFitsNoOne https://t.co/umV2dxKOs5 |
| Dr. Kelly Shanahan @stage4kelly @coffeemommy Hi Stacey! You and me both: the stumbling upon, not the research😂 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat A3 My impression outcome is more about money (profit & costs), than it is about an appropriate treatment that serves. #patientchat |
| Kimberly Amelia @fireflyrn84 We will continue to reinforce this concept every time! #Qualityoflife is the number one priority! It has so many implications and is different for everyone. #patientchat https://t.co/y2CGBMVZbL |
| Heidi Grabenstatter @PatientIntv RT @coffeemommy: THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so important to bring all the stakeholders in from the get go and collaborate on the structure #patientchat #OneSizeFitsNoOne https://t.co/umV2dxKOs5 |
| Patient Chat @patientchat #patientchat https://t.co/lHVo8zuau0 |
| Barby Ingle Official @BarbyIngle T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results of clinical trials r presented in final findings, not just the successes, I want to know how many started study/finished & exclusions involved #patientchat https://t.co/4Y3n1egt75 |
| Dr. Kelly Shanahan @stage4kelly @power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. Some of the smartest and most effective advocates I know have zero science background, but they are experts in our disease. #patientchat |
| Kimberly Amelia @fireflyrn84 @PatientIntv @SalemOaks I'd be willing to collaborate with anyone that is willing. The nurse always lives on! #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @stage4kelly And therefore can I get a simultaneous YaY and Boo for free wi-fi and auto connect capabilities #patientchat |
| Vera Rulon FAHIMA @vrulon @JamieRoger8 @QuinlanTurner @patientchat @SalemOaks That couldn't be more true. These are the insights that are most important in developing new treatments: #PatientsIncluded #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @BarbyIngle A2 On the other hand, a person who is new to a disease is apt to not have preconceptions. It would be valuable to track this patient through the entire process & in review see how outlook & response changes or stays the same. #patientchat |
 | kathy kastner @KathyKastner RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat |
| Patient Empowerment Network @power4patients RT @stage4kelly: @power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. Some of the smartest and most effective advocates I know have zero science background, but they are experts in our disease. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski “it takes at least 10yrs for a new medicine to journey from initial discovery to the marketplace, with clinical trials alone taking six to seven years” patient can only hope to be in the right decade 😳 #patientchat https://t.co/59BYZ8x0ER |
| Alan Brewington @abrewi3010 T3 patients want a better quality of life. Scientists want knowledge & development. CEOs want profits. Time means 3 diff things to these groups #patientchat |
| Ken Taylor, RPIC @KenRayTaylor T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX |
| Your GPS Doc, LLC @yourgpsdoc A4: Both are important. I’m not sure I can prioritize one over the other. #patientchat https://t.co/9g9AK62QsT |
 | Dr. Nancy Kusmaul @nancy_kusmaul @patientchat #patientchat The other posters are right, patients need to be included at all stages from designing to conclusion. Only then can their needs and experiences be heard. |
| Annette McKinnon @anetto RT @H_SalemOaks: @anetto Agreed, especially on what gets researched. What other industry doesn’t ask their customers before investing in product development #patientchat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T4: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX |
| Geeky Fox @TechKitsune T4:That's tough, both have their own right of opportunities. Trials could be run better in have more info for patients. But influencing treatments studied is huge for communities waiting for a cure! There are so many chronic illnesses that wait. #patientchat |
 | Us TOO International @UsTOOHQ We believe in empowering #prostatecancer patients and caregivers with support and educational resources to make informed decisions on testing, treatment, and management of side effects. @UsTOOHQ #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @BarbyIngle A2b Also, someone who has been a #caregiver to someone who now has the same disease will have some background going into the dx. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: Happy Hoppy Hippy Friday! #patientchat https://t.co/mkSjYBW3il |
| Your GPS Doc, LLC @yourgpsdoc RT @abrewi3010: T3 patients want a better quality of life. Scientists want knowledge & development. CEOs want profits. Time means 3 diff things to these groups #patientchat |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results of clinical trials r presented in final findings, not just the successes, I want to know how many started study/finished & exclusions involved #patientchat https://t.co/4Y3n1egt75 |
| Kimberly Amelia @fireflyrn84 T4: Influencing which treatments are being studied. If a clinical trial is in progress, the treatment decision has already been made. Being able to participate in deciding which treatments are studied allows us to leverage our diseases to an extent. #patientchat |
| Salem Oaks @SalemOaks @abrewi3010 Excellent point. The stakeholders are not aligned! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: #patientchat https://t.co/lHVo8zuau0 |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results of clinical trials r presented in final findings, not just the successes, I want to know how many started study/finished & exclusions involved #patientchat https://t.co/4Y3n1egt75 |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T4: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX |
| Kimberly Amelia @fireflyrn84 RT @coffeemommy: THIS! Must understand patient priorities & perspective in order to incentivize appropriately. Yet another reason it is so important to bring all the stakeholders in from the get go and collaborate on the structure #patientchat #OneSizeFitsNoOne https://t.co/umV2dxKOs5 |
| Alan Brewington @abrewi3010 RT @stage4kelly: @power4patients @abrewi3010 Health literally see comes pretty darn quickly when you've been giving a terminal diagnosis. Some of the smartest and most effective advocates I know have zero science background, but they are experts in our disease. #patientchat |
| Kimberly Amelia @fireflyrn84 @sittingpretty61 Great idea! #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T3: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to come to final stages. #patientchat https://t.co/RUDnBaldpM |
| Jamie Roger @JamieRoger8 But if they all form a relationship to progress forward, they all might just succeed in achieving their goals #lifegoals #patientengagement #relationshipadvice #patientchat @salemoaks https://t.co/DCeY4Iq0oG |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat |
| Salem Oaks @SalemOaks Yup. One feeds the other. If the right treatments are studied, then less time will be needed. If the process can be sped up, then more treatments can be studied. The right balance is the holy grail. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/E13QQkFTd3 |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/bCP55yeP94 #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T4. I think biggest opp 4 involvement is influencing which TXs r being studied. Although we need 2 insure that all results of clinical trials r presented in final findings, not just the successes, I want to know how many started study/finished & exclusions involved #patientchat https://t.co/4Y3n1egt75 |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T4: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX |
| Your GPS Doc, LLC @yourgpsdoc @bbhomebody Drug companies are very afraid of the legal implications. Even if patients sign disclaimers, how will the family react if they die from the side effects of a medication not fully studied? #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T3: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to come to final stages. #patientchat https://t.co/RUDnBaldpM |
| Vera Rulon FAHIMA @vrulon @patientchat T4: Fascinating question. I say both. Sorry. If we focus on which treatments we won't streamline the process to get needed treatments to people, if we focus on improving the process treatments would get out there but are they the right ones? #patientchat |
| Richard Zhao @richardzhao I know an entrepreneur that developed a tool for all clinical trail research. Too bad that they are targeting pharm companies, rather than focusing on patients participation. #patientchat |
| Dr. Kelly Shanahan @stage4kelly @patientchat First we need to fix how trials are. Trials need to become more inclusive & easier for patients to access, thus decreasing time to accrual and increasing accrual rates. This is the foundation upon which we need to build. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 A1 A large factor, for sure! & speaking too fast without active listening with compassion. #patientchat |
| Heather McCullen @H_SalemOaks I feel like its missed that every person who becomes a patient as an adult probably had a job that had nothing to do with being a patient. They have a huge variety of untapped skill. For more common diseases you could find a person with any job you can imagine. #patientchat https://t.co/KXkd2VTkOq |
| Alan Brewington @abrewi3010 T4 how about paying patients for their time & expertise just like you pay scientists/admin. That would have a huge influence in everything #patientchat |
| Patient Chat @patientchat T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| PatientOrator @PatientOrator T4: Social media presents a big opportunity for influencing which #treatments are being studies as it is used as a tool by many #patients to voice their experience with illnesses or diseases that are not so commonly represented in the media or elsewhere. #patientchat https://t.co/xvG0L3Z4XJ |
| Barby Ingle Official @BarbyIngle Totally. #patientchat https://t.co/oN8lHEY1SY |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: T1. There are so many rules/regs in clinical trials and product development, that sometimes its difficult for companies to involve the patient voice (they have to check w the lawyers first), yet, we should be involved from pre-plan to market #patientchat https://t.co/uNsLcuhPjC |
| Dr. Nancy Kusmaul @nancy_kusmaul @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interventions improve the outcomes in which patients are interested? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: T3. It takes about 2000 ideas and 8-12 years to bring a new treatment to market, patients have little faith in new medications because of being left out of the process of creation and lack of transparency, this is slowly changing, but needs fixing #patientchat https://t.co/TLfSFhx976 |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T3: T3: Time is safety but i also believe in the right to try. Some patients dont have the time it takes for treatments to come to final stages. #patientchat https://t.co/RUDnBaldpM |
| Angela Cohen @angelee828 @patientchat T2: Every patient can potentially react differently which can help in the development of medicine. That’s why things are closely monitored during research/trials. But IMO in development you should already know your body. Personally, I didn’t at dx. some may tho. #patientchat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T2: T2: Patients are the beta testers of medicine development and should be taken seriously. #patientchat https://t.co/TZu1ROLDRx |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T1: T1: physical and/or emotional, organisational barriers such as timing and location of meetings. #patientchat https://t.co/0GKzVknT99 |
| Mary MACK @MaryOCMack T4. Both have equal opportunities I would say. Patients have ideas about what could be studied, as well as answers to what's wrong with the research culture. #patientchat |
| Beth Morton @beth_morton T4: The latter. For the benefit of all #migraine patients, I'd want to be able to inform the R&D discussion before they are studied. We know better than our doctors even what is missing from our treatment. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake Perfect. #patientchat https://t.co/uGfwXWTsM9 |
| Kimberly Amelia @fireflyrn84 @H_SalemOaks exactly! #patientchat |
| Dr. Kelly Shanahan @stage4kelly @power4patients @abrewi3010 *literacy. Darn voice to text 😂 #patientchat |
| kathy kastner @KathyKastner RT @nancy_kusmaul: @patientchat T4: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interventions improve the outcomes in which patients are interested? #patientchat |
 | Zayna Khayat, PhD @ZaynaKhayat RT @abrewi3010: T4 how about paying patients for their time & expertise just like you pay scientists/admin. That would have a huge influence in everything #patientchat |
| Jamie Roger @JamieRoger8 caregivers and parents of Dx patients can be HUGE libraries of knowledge as far as the patient experience and Tx being used. They may remember parts of the Tx plan that the patient may not. #relationshipadvice #patientchat @salemoaks #patientengagement https://t.co/VASBLBWPNT |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient perspective. People benefit in hearing all sides of the story. A 360 perspective --> context. Context --> Understanding. Understanding --> Empathy. #patientchat |
| Salem Oaks @SalemOaks Shameless plug opportunity. :) @SalemOaks is committed to working with patients so they can be more effective influencers of R&D. #patientchat https://t.co/NIAr2RXb0Y |
 | Jack Aiello @JackMAiello T4: Just tuned in (early in Hawaii). Obviously both are important. CT’s need to be designed to represent more real-world eligibility criteria and of course, the treatment are important if they show a significant survival and/or QOL benefit. #myeloma #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul RT @PatientOrator: T2: T2: Patients should play the key role in medicine development. First, cost affects who has access to the medicine once its been developed. Second, regulations has to be revised to be pro patient rather than pro #BigPharma Third, be #PatientsIncluded in development #patientchat https://t.co/ifTsSVViWL |
| Lillian Lake - Host of #SoulNestingChat @llake Soooo true. #patientchat https://t.co/XfzNLAPj7g |
| Dr. Nancy Kusmaul @nancy_kusmaul RT @abrewi3010: T1 I think medical literacy is the biggest barrier. Patients, healthcare, researchers all speak different languages #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! SalemOaks: @richardzhao Welcome to the party! #patientchat #drugdevelopment #pharma #patienteducation |
| Heather McCullen @H_SalemOaks RT @beth_morton: T4: T4: The latter. For the benefit of all #migraine patients, I'd want to be able to inform the R&D discussion before they are studied. We know better than our doctors even what is missing from our treatment. #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! JamieRoger8: @richardzhao So glad to have you for the discussion! @salemoaks #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! fireflyrn84: @richardzhao Hi Richard! How is the project coming along? Hope all is well in the Twin Cities. #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! fireflyrn84: @richardzhao Sounds good! Hope things are going well and settling down. #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! bbhomebody: @richardzhao Hi Richard🖑 I hope you're well. We miss working with you! #patientsentiment #patientchat |
| Alan Brewington @abrewi3010 RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient perspective. People benefit in hearing all sides of the story. A 360 perspective --> context. Context --> Understanding. Understanding --> Empathy. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @JamieRoger8 @SalemOaks Absolutely! This happens all of the time. Advocates (caregivers) are valuable tools. #patientchat |
| Inspire @InspireIsHealth RT @UsTOOHQ: We believe in empowering #prostatecancer patients and caregivers with support and educational resources to make informed decisions on testing, treatment, and management of side effects. @UsTOOHQ #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @BarbyIngle: Totally. #patientchat https://t.co/oN8lHEY1SY |
| Inspire @InspireIsHealth RT @KenRayTaylor: T4: T4: Influencing which treatments are being studied i believe will target the patients that are willing, able and motivated for what may help them the most. #patientchat https://t.co/mOkCJcldnX |
| Patient Chat @patientchat RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient perspective. People benefit in hearing all sides of the story. A 360 perspective --> context. Context --> Understanding. Understanding --> Empathy. #patientchat |
| Vera Rulon FAHIMA @vrulon @stage4kelly @patientchat Couldn't agree more. Thank you. There are many barriers/stumbling blocks. #patientchat https://t.co/rDme8vCr18 |
| Barby Ingle Official @BarbyIngle T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to share that with developers and know what would be the wish, and how do you see getting there? #patientchat https://t.co/cDqKy7T5yF |
| Ken Taylor, RPIC @KenRayTaylor T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something makes them feel better or worse. #patientchat https://t.co/rQkLpNSpuu |
| Kimberly Amelia @fireflyrn84 T5: Have a registry that patients can look at and know wha trials are recruiting. There are registries already, but if they could be disease based and easier to navigate. #patientchat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T5: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something makes them feel better or worse. #patientchat https://t.co/rQkLpNSpuu |
| Vera Rulon FAHIMA @vrulon RT @nancy_kusmaul: @patientchat T4: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interventions improve the outcomes in which patients are interested? #patientchat |
| Dr. Kelly Shanahan @stage4kelly @abrewi3010 Since we aren't even included in the conversation a large proportion of the time, I don't want to lose the opportunity to influence the process because of money. Also by taking money we can lose objectivity. #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T5: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something makes them feel better or worse. #patientchat https://t.co/rQkLpNSpuu |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to share that with developers and know what would be the wish, and how do you see getting there? #patientchat https://t.co/cDqKy7T5yF |
| Jamie Roger @JamieRoger8 RT @patientchat: T5: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T5: T5: Simple quick surveys pertaining to the research and development. Patients are very willing to tell you if something makes them feel better or worse. #patientchat https://t.co/rQkLpNSpuu |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to share that with developers and know what would be the wish, and how do you see getting there? #patientchat https://t.co/cDqKy7T5yF |
| Kimberly Amelia @fireflyrn84 YES! YES! YES! #patientchat https://t.co/irLNKoIzZi |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 A3 Indeed. Which is where listening skills & setting aside ego comes in handy. And then there are the stockholders... #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Use our outside voices effectively. Knock on doors. Multiple times if they don't open quickly. Generously listen to others & share our experiences and our goals (i.e. more cohesive, collaborative environment to accelerate research & improve care focused on #QoL) #patientchat T5 https://t.co/lECdChPc8k |
| Heather McCullen @H_SalemOaks Check out @antidote_me (no affiliation) #patientchat https://t.co/oWSGsLmYA3 |
| Geeky Fox @TechKitsune T5: Present the info! Keep us informed, we might not know the process or outcomes. I'm more likely to look in to a treatment with more facts surrounding it. I might advocate for someone else to try it if I know what possibilities there are. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T5. Learn their disease, know their available options, and know what would help with their life improvement, be able to share that with developers and know what would be the wish, and how do you see getting there? #patientchat https://t.co/cDqKy7T5yF |
| Dr. Nancy Kusmaul @nancy_kusmaul @QuinlanTurner @patientchat T4: We also need to pursue treatments that are realistic, financially and in terms of patient burden. Even if we develop the "perfect" treatment, it will be not be helpful if it doesn't address these things. #patientchat |
| Mary MACK @MaryOCMack T5 The business of medicine in the US coupled with the need for patients to participate in clinical trials is troubling. It is true that if a drug comes to market, many patients will be priced out. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T5: T5: How might patients, care partners, and advocates contribute more actively to research and development? #patientchat |
| Salem Oaks @SalemOaks A5: Get educated about drug development so you can stand toe-to-toe with some very smart and powerful people. (They are just people) #patientchat #drugdevelopment #pharma #patienteducation |
| Patient Chat @patientchat Topic 6 (T6:) coming up...https://t.co/bCP55yeP94 #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat T5: first things first - change culture in pharma R&D. I once recommended a cystic fibrosis caregiver to help design a trial for a Tx for the condition. I was told they will have to wait until the protocol was completed. SMH. #patientchat |
| Jamie Roger @JamieRoger8 I think that if they were educated on HOW to participate more then the stress/ inability to participate will decrease. This will allow them to have a better dialogue with their Tx team or pharma. @salemoaks #patientchat #patientengagement #educateeveryone https://t.co/O4mgD1Xsaq |
| Dr. Nancy Kusmaul @nancy_kusmaul @patientchat T5: By discussing priorities. What is important to you and why? What are your treatment goals? What is a quality outcome for you? #patientchat |
| Salem Oaks @SalemOaks A5: Ask for things that are feasible. You may need to learn what they are, but if you ask for things that researchers can do they will. AND they will maybe push the envelope a little further on your next one. #patientchat #drugdevelopment #pharma #patienteducation |
| Kimberly Amelia @fireflyrn84 @H_SalemOaks @antidote_me I’m actually partnered with them for my blog :) #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T4 Runaway prices of such products raise a raft of challenges to ensuring that those in need of treatment have adequate access: https://t.co/KZOOvCVbUn #patientchat |
| Patient Chat @patientchat T6: What would you want to know more about in order to be more influential with research and development folks? #patientchat |
| Beth Morton @beth_morton @fireflyrn84 Yes! This would be so helpful! https://t.co/DWWFqJ3s4W is not the most navigable website. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc A5: Opportunities for patients and caregivers to provide input from the beginning would be much appreciated. Perhaps front-line clinicians having easy access to clinical trials and sharing info with patients. #patientchat https://t.co/wdNpWuTjyk |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: What would you want to know more about in order to be more influential with research and development folks? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @KenRayTaylor The downside is when the medicine works & then it's taken away because of the approval process. At best, it is discouraging. At worst, it can mean complications & death. #patientchat |
 | Dan Engel @DanEngelPTT @BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert on the process. #Patientchat |
| Alan Brewington @abrewi3010 @stage4kelly I don’t think patients would lose objectivity. We still hurt, we can now afford to eat better bc we have some $. I do agree about losing influence, tight rope to walk. #patientchat |
| Salem Oaks @SalemOaks You win the understatement award for today! #patientchat https://t.co/mNksip6zjC |
| Barby Ingle Official @BarbyIngle RT @DanEngelPTT: @BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert on the process. #Patientchat |
| PatientOrator @PatientOrator T5: #Patients can contribute more actively to research and development by; sharing that they are interested in participating in research and development with those in the field. Inquiring about activities from doctors, colleges and internet etc. #patientchat https://t.co/M0RnBavtYO |
| Vera Rulon FAHIMA @vrulon RT @BarbyIngle: T2. I believe that it is important for patients to be involved in medicine development from pre-plan to market, but the patients have to be educated and understand their disease, I dont think a new patient would be the person we want influencing the development #patientchat https://t.co/bQmriKNeeK |
| Jamie Roger @JamieRoger8 YES! Opening that discussion can lead to so many more that can positively effect your treatment in the long run. @salemoaks #patientchat #talkfreely #priorities https://t.co/kYD6fXlwz3 |
| Salem Oaks @SalemOaks @abrewi3010 @stage4kelly From a company point of view, there are many compliance issues to manage. Trying to use the same process used for healthcare providers doesn't work for patients. #patientchat #drugdevelopment #pharma # patienteducation #sunshineact |
| Vera Rulon FAHIMA @vrulon @llake @BarbyIngle Interesting point! #patientchat |
| Kimberly Amelia @fireflyrn84 @beth_morton There's another one too, researchmatch or something like that. Ugh, darn brain! #patientchat |
| Barby Ingle Official @BarbyIngle T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and access to them to share my influence (my story). #patientchat https://t.co/7aeYh0xVM5 |
| Ken Taylor, RPIC @KenRayTaylor T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential help the treatment will provide. #patientchat https://t.co/0M8ZQw64Tc |
| Alan Brewington @abrewi3010 T5 #caregivers are definitely underutilized despite their knowledge base being worth more than gold! We need to get them involved more #patientchat |
| Heather McCullen @H_SalemOaks @TechKitsune What barriers do you see to learning the process? What would you most want to know? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @nancy_kusmaul: @patientchat T4: @patientchat T4: Both and more! It is not just about treatments, it is about understanding patient goals! What interventions improve the outcomes in which patients are interested? #patientchat |
| Jamie Roger @JamieRoger8 That gap needs to be bridged for many reasons. @salemoaks #patientchat #patientengagement #crossthatbridgeNOW https://t.co/2p0j3KY8SH |
| Kimberly Amelia @fireflyrn84 T6: Advisory panels, does industry want us involved on a consistent basis #patientchat |
| Geeky Fox @TechKitsune T6: Processes, how did they come to their conclusions, how is it being explained? Is it being taught to me or just spoken? I want to understand because I think it's interesting and not a part of my normal world. #patientchat |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T6: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential help the treatment will provide. #patientchat https://t.co/0M8ZQw64Tc |
 | Dennis Keim @denniskeim RT @stage4kelly: @patientchat First we need to fix how trials are. Trials need to become more inclusive & easier for patients to access, thus decreasing time to accrual and increasing accrual rates. This is the foundation upon which we need to build. #patientchat |
| Dennis Keim @denniskeim RT @patientchat: T4: Which presents the biggest opportunity for involvement: T4: Which presents the biggest opportunity for involvement: Improving how clinical trials are run? OR Influencing which treatments are being studied? Why? #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat T6: Is there interest in learning who within the R&D world is best to reach out to? Often these large companies aren't transparent on who's who and it is difficult to navigate the organization. #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul @abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How can researchers address the barriers to participation? #patientchat |
| PatientOrator @PatientOrator T5: Care partners can contribute more actively to research and development by engaging those that they care for with educational materials around research and development. Providing their input to researchers and developers on behalf of the patient etc. #patientchat https://t.co/M0RnBavtYO |
| Ken Taylor, RPIC @KenRayTaylor RT @llake: @KenRayTaylor The downside is when the medicine works & then it's taken away because of the approval process. At best, it is discouraging. At worst, it can mean complications & death. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: T3 I think development of meds would be quicker if patients & scientists spent more time discussing quality of life issues. #patientchat |
| Kimberly Amelia @fireflyrn84 @Clara_Health also has great resources for clinical trials and research #patientchat |
| Alan Brewington @abrewi3010 T6 how does the research affect my quality of life. #patientchat |
| Salem Oaks @SalemOaks @sittingpretty61 Simple stuff - that nobody has taken care of. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Beth Morton @beth_morton T6: As a relative newbie #advocate, I've yet to find ways to make meaningful contact with researchers and drug companies, etc., so that I can have some influence. I'd love to know how to do that! #patientchat |
| Angela Cohen @angelee828 @patientchat T5: I ask about research at almost every appt I go to. Some of the doctors I know are fantastic abt taking a few minutes to discuss research even if it’s just in the process. You won’t know until you ask. #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul @vrulon @patientchat T6: What kind of influence are you interested in having? Drug development is often done by the large companies but much of the application thereof is done in the academic world. How do we build bridges? #patientchat |
| Jamie Roger @JamieRoger8 @Crohnoid Rookie mistake. and one i am ALWAYS guilty of, I never learn. #patientchat |
| Ken Taylor, RPIC @KenRayTaylor It would be the side effects of the med, because it will empower you to become a good influencer #patientchat https://t.co/rRmuLKO4d2 |
| Heather McCullen @H_SalemOaks @TechKitsune I ask because this is main focus of @SalemOaks, we aspire to teach patients and patient advocates about the entire process of medicines development. #patientchat |
| Jack Aiello @JackMAiello T5: There are a surprising number of opportunities: Local IRB’s and Scientifid Review Committees at cancer centers, National Clinical Trials Network grous (eg @SWOG), NCI itself, contact Pharma and offer to share your story #myeloma #patientchat |
 | Matthew Katz, MD 🟦 @subatomicdoc RT @coffeemommy: Reminder Patient Involvement provides not just an oppty for researchers/clinicians/pharma to better understand patient perspective. People benefit in hearing all sides of the story. A 360 perspective --> context. Context --> Understanding. Understanding --> Empathy. #patientchat |
| Vera Rulon FAHIMA @vrulon @TechKitsune Agree. Transparency on how R&D works is key to also work on pharma reputation. It's a shame IP gets in the way & it takes so long for results to be published! #patientchat |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and access to them to share my influence (my story). #patientchat https://t.co/7aeYh0xVM5 |
| Lisa Davis Budzinski @lisadbudzinski Watch FDA site for opportunities to speak on different conditions https://t.co/5YpuPuim8K #patientchat |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and access to them to share my influence (my story). #patientchat https://t.co/7aeYh0xVM5 |
| Lillian Lake - Host of #SoulNestingChat @llake @SalemOaks @abrewi3010 @stage4kelly Or perhaps the compliance process needs to change to better benefit all stakeholders. #patientchat |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: It would be the side effects of the med, because it will empower you to become a good influencer #patientchat https://t.co/rRmuLKO4d2 |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T6: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential help the treatment will provide. #patientchat https://t.co/0M8ZQw64Tc |
| PatientOrator @PatientOrator T5: advocates can contribute more actively to research and development by raising awareness of any particular disease or illness and or ways to improve patient wellbeing/wellness #patientchat https://t.co/M0RnBaN5no |
| Jamie Roger @JamieRoger8 RT @nancy_kusmaul: @abrewi3010 T5: @abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How can researchers address the barriers to participation? #patientchat |
| Heidi Grabenstatter @PatientIntv @PatientOrator Yes, the young eager undergrad or high school student emails the professor expressing an interest in the research. The same trick will works for patients of any age. The more enthusiastic, the better. The funding status of the lab is public. #patientchat |
| Mary MACK @MaryOCMack T6. Whether patient ideas are truly welcome. And if the ideas are welcome and are good and implemented, whether that person/patient will be credited and monetarily rewarded. #patientchat |
| Dr. Kelly Shanahan @stage4kelly T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry for patients who want to be involved? I know the metastasis research society has one, but what about others? #patientchat https://t.co/dHKd804Cyz |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T6: T6: I would want to know the potential side affects to feel confident when trying to be influential, also the potential help the treatment will provide. #patientchat https://t.co/0M8ZQw64Tc |
| Lisa Davis Budzinski @lisadbudzinski RT @Crohnoid: T5: |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T6. My disease being studied, what else needs to be studied, the researchers involved in and interested in the disease, and access to them to share my influence (my story). #patientchat https://t.co/7aeYh0xVM5 |
| iPain Foundation Research Projects @iPain_Research RT @DanEngelPTT: @BarbyIngle @patientchat I agree with you @BarbyIngle I may be an educated patient but I am not a scientist nor an expert on the process. #Patientchat |
| Alan Brewington @abrewi3010 Any ideas? #patientchat #wtfix #hcsm #medx https://t.co/Hw9acYBIXi |
| Kimberly Amelia @fireflyrn84 CT: We need to get more patient involvement at the base level with organizations that are pursuing new treatments. If we’re the ones utilizing it, then we need to be involved. Great chat as always! Nap time now, worn out. Phase 2 of my migraine surgery one Monday! #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @fireflyrn84: @Clara_Health also has great resources for clinical trials and research #patientchat |
| Your GPS Doc, LLC @yourgpsdoc Agree 100%! #patientchat https://t.co/CgMZ7GaRvp |
| Vera Rulon FAHIMA @vrulon @nancy_kusmaul @patientchat That's a great question. Linking corp to academia to real world solutions is key. #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul @abrewi3010 T6: Quality of life for those with your diagnosis too. So much research is focused on "cure" or numbers, while my perception is that people want to learn how they can live better with the diagnosis. Am I correct? #patientchat |
| Salem Oaks @SalemOaks New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for patients, caregivers, and advocates to make requests. https://t.co/QEDBhhlIfd |
| Kimberly Amelia @fireflyrn84 @beth_morton Go to pharma websites and explore or google “patient involvement with pharma.” You should get a lot of info that way! #patientchat |
 | Marie Ennis-O'Connor @JBBC @power4patients Right on! #patientchat https://t.co/j7Mpf827fw |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 @stage4kelly They may lose objectivity, but I contend pharmaceuticals lose objectivity because of money influence. Physicians as well. So I hold that it's not a valid argument for not compensating participants. #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul RT @stage4kelly: T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry for patients who want to be involved? I know the metastasis research society has one, but what about others? #patientchat https://t.co/dHKd804Cyz |
| PatientOrator @PatientOrator T6: I think #patients would want to know more about who's conducting the research or development and for what purpose. #patientchat https://t.co/PDpNhvEUZG |
| Angela Cohen @angelee828 RT @fireflyrn84: @Clara_Health also has great resources for clinical trials and research #patientchat |
| Kimberly Amelia @fireflyrn84 @SalemOaks Thank you #patientchat |
| Salem Oaks @SalemOaks I agree. There is a solution here if we work on it together. #patientchat https://t.co/qn26yhkkjt |
| Lisa Davis Budzinski @lisadbudzinski RT @richardzhao: I know an entrepreneur that developed a tool for all clinical trail research. Too bad that they are targeting pharm companies, rather than focusing on patients participation. #patientchat |
| Your GPS Doc, LLC @yourgpsdoc CT: #patients and #caregivers should be involved in research and development at the beginning stages. Eliminating barriers and forging partnerships is the first step. #patientchat https://t.co/q8ffjCWHCR |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T6: T6: What would you want to know more about in order to be more influential with research and development folks? #patientchat |
| Alan Brewington @abrewi3010 @nancy_kusmaul Agree 💯 % #patientchat |
| Patient Chat @patientchat Thanks to all for joining today's Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour #patientchat |
| Dr. Kelly Shanahan @stage4kelly @nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective treatments that will allow me to live longer with a better quality of life. I'd be perfectly happy if it were a chronic condition and not a death sentence #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Lisa Davis Budzinski @lisadbudzinski RT @Crohnoid: |
| Salem Oaks @SalemOaks CT: Earliest involvement: Patient/Disease organizations should work on performing natural history studies and creating validated measures of disease progress and improvement. #patientchat #drugdevelopment #pharma #patienteducation https://t.co/FmfO56fIBI |
| Dr. Nancy Kusmaul @nancy_kusmaul @bbhomebody T6: I think this exists in some places, for some diseases. For example the Alzheimer's association has Trial Match https://t.co/o9GSpm039f #patientchat |
| PatientOrator @PatientOrator @PatientIntv Agreed! Patients actively engaging/inquiring is key #patientchat |
| Patient Chat @patientchat Thanks so much @SalemOaks for sharing your insights and being our guest for today’s #patientchat |
 | Savvy Cooperative | #AskPatients @savvy_coop @bbhomebody @stage4kelly This is what we are working on! And @bbhomebody, as a co-op member, you’re a part of this! #patientchat |
| Patient Chat @patientchat Don’t forget to to check out the work Salem Oaks is doing here: https://t.co/l3lVDXQdFp #patientchat |
| Alan Brewington @abrewi3010 RT @stage4kelly: @nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective treatments that will allow me to live longer with a better quality of life. I'd be perfectly happy if it were a chronic condition and not a death sentence #patientchat |
| Heather McCullen @H_SalemOaks Thanks everyone for participating. We had a great time. Any of you who have been in a tweetchat with me before knows I’ll be catching up and replying for the next few hours. 😂#patientchat |
| Your GPS Doc, LLC @yourgpsdoc RT @nancy_kusmaul: @bbhomebody T6: @bbhomebody T6: I think this exists in some places, for some diseases. For example the Alzheimer's association has Trial Match https://t.co/o9GSpm039f #patientchat |
| Alan Brewington @abrewi3010 @stage4kelly @nancy_kusmaul Well put on so many levels! #patientchat |
| Marie Ennis-O'Connor @JBBC Just catching the end of a very interesting discussion - lots of great ideas from participants here! #patientchat #whywedoresearch https://t.co/GptfQyAj2K |
| Jack Aiello @JackMAiello @bbhomebody Something beyond clinical https://t.co/8UFyEVoi01? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchatIanother excellent #patientchat Thank you to all for inspiration and food for thought. |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, April 20th https://t.co/lRhU0PEGMz Hope to see you there! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey <sigh> that time when you REALLY want to be all in on a t-chat, and your biggest client calls 5 minutes in 😱😱 sorry for the MIA, dudes! #patientchat |
| Alan Brewington @abrewi3010 Percocet is trying hard but the pain is playing to win. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @stage4kelly: @nancy_kusmaul @abrewi3010 As someone with metastatic breast cancer for which there is no cure, I just want more effective treatments that will allow me to live longer with a better quality of life. I'd be perfectly happy if it were a chronic condition and not a death sentence #patientchat |
| Jamie Roger @JamieRoger8 #patientchat the wealth of knowledge that is in this group of humans is empowering. So glad to have shared this time with all of you, continuing being #patientadvocates #patientscientists and #powerfulspeakers SO #Thankful @salemoaks |
| Kimberly Amelia @fireflyrn84 @angelee828 Thank you! It’s another big one and a leap of faith. Phase 1 has been very effective! #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul RT @JBBC: Just catching the end of a very interesting discussion - lots of great ideas from participants here! #patientchat #whywedoresearch https://t.co/GptfQyAj2K |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @PatientOrator: T6: T6: I think #patients would want to know more about who's conducting the research or development and for what purpose. #patientchat https://t.co/PDpNhvEUZG |
| Lisa Davis Budzinski @lisadbudzinski @patientchat @SalemOaks Thank you for introducing us to @SalemOaks ✨ #patientchat |
| Jamie Roger @JamieRoger8 @Crohnoid That's what I always think... and then #FOMO haha #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Savvy Cooperative | #AskPatients @savvy_coop This 👏🏽is👏🏽why👏🏽we’re👏🏽here👏🏽! Yay! Join us and help us show the industry there is a passionate network of patients ready to get involved! Become a co-op member and help us shape this movement https://t.co/NwxqEMMeNz #patientchat https://t.co/0olqTVq53z |
| Savvy Cooperative | #AskPatients @savvy_coop RT @SalemOaks: New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for patients, caregivers, and advocates to make requests. https://t.co/QEDBhhlIfd |
| Patient Empowerment Network @power4patients @nancy_kusmaul @abrewi3010 Having been a caregiver myself, I know how hard it is to handle the daily stress. Bottom line is we need to vigilantly support caregivers so they can contribute to research AND maintain their own health #patientchat |
| Dr. Kelly Shanahan @stage4kelly @JackMAiello @bbhomebody https://t.co/VooHjQf0N9 is difficult for many patients to navigate. I would love to see a centralized clearinghouse , funded by industry/govt, where a patient can call in, speak to a real live person who helps them find appropriate trials. #patientchat |
| Jamie Roger @JamieRoger8 @beth_morton @SalemOaks @H_SalemOaks Can't wait! #patientchat #patientadvocate |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @nancy_kusmaul: @abrewi3010 T5: @abrewi3010 T5: I agree. Do you have suggestions on how to access #caregivers who are overburdened and stressed? How can researchers address the barriers to participation? #patientchat |
| Dr. Nancy Kusmaul @nancy_kusmaul RT @power4patients: @nancy_kusmaul @abrewi3010 Having been a caregiver myself, I know how hard it is to handle the daily stress. Bottom line is we need to vigilantly support caregivers so they can contribute to research AND maintain their own health #patientchat |
| Vera Rulon FAHIMA @vrulon Thanks for a terrific #patientchat y'all!! This was enlightening. Keep me posted on the next one!!! |
| Heidi Grabenstatter @PatientIntv @nancy_kusmaul @abrewi3010 @fireflyrn this circles back to our T1 convo. . . customized incentives to meet unmet needs of care partners and patients. Everyone is an individual. #patientchat |
| Heather McCullen @H_SalemOaks @MightyCasey I’ll read all your replies, promise! #patientchat |
| Amanda G @LAlupusLady . @BarbyIngle and i were talking about this... Thanks to Erin for sharing great link @GilmerHealthLaw #patientchat https://t.co/YCgOsiOvUV |
| Savvy Cooperative | #AskPatients @savvy_coop @SalemOaks Thanks for sharing https://t.co/6owHnEOcPa!!! We are growing, but we will be more effective the more patients we have so that industry knows patients are serious and ready to get involved. #patientchat |
 | Joe Babaian 🇺🇦 @JoeBabaian RT @SalemOaks: New organization working on this. @savvy_coop The list of 'gigs' is growing. #patientchat They also have an area for patients, caregivers, and advocates to make requests. https://t.co/QEDBhhlIfd |
| Vera Rulon FAHIMA @vrulon @stage4kelly @JackMAiello @bbhomebody I wonder if PhactMI should take that on? #patientchat https://t.co/BNZqBkMJGA |
| Jamie Roger @JamieRoger8 @power4patients @nancy_kusmaul @abrewi3010 Such a crucial step in the Tx plan for the patient and the continued QOL for the caregiver. We can't care for others if we forget to care for ourselves. #amen #selfcare #patientchat @SalemOaks |
| Vera Rulon FAHIMA @vrulon @LAlupusLady @BarbyIngle @GilmerHealthLaw I was reading that article this morning. #patientchat |
| Jack Aiello @JackMAiello @stage4kelly @bbhomebody Yes, I agree that https://t.co/4XrNdLQ5li can be difficult although the new version is better. Many of the disease advocacy groups do have CT specialist who talk with pts and help find clinical trials. #patientchat |
| PatientOrator @PatientOrator @stage4kelly Love this! Excellent approach to getting more #patients involved! #patientchat |
| Jamie Roger @JamieRoger8 Another time when technology takes away from the #humanrelationship and the ability to engage. #communication #patientchat @SalemOaks https://t.co/sBBhvdSnWJ |
| Jamie Roger @JamieRoger8 @vrulon Thank you for joining us @salemoaks #patientchat |
| Vera Rulon FAHIMA @vrulon @stage4kelly @JackMAiello @bbhomebody While PhactMI is current geared to providers - I'm suggesting they consider being more patient facing given all the pharma co's involved #patientchat OK - now really signing off. |
 | Irving Amukasa @iamukasa RT @abrewi3010: Any ideas? #patientchat #wtfix #hcsm #medx https://t.co/Hw9acYBIXi |
| Jamie Roger @JamieRoger8 @bbhomebody @JackMAiello #transparency is the key word there. #patientchat |
 | Tatiana Prowell, MD @tmprowell RT @stage4kelly: T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design. We know what's important to us in terms of outcomes and side effects. #patientchat |
| Jamie Roger @JamieRoger8 RT @Crohnoid: |
| Dr. Kelly Shanahan @stage4kelly Glad I found this chat - great discussion!! #patientchat |
| Jamie Roger @JamieRoger8 @unitepangaea The relationships involved in RD are so easily overlooked but more important than people realize #relationshipadvice #useyourvoice #patientscientist #patientchat @SalemOaks |
| Heidi Grabenstatter @PatientIntv @patientchat T6: Everyone can stand to be more openminded. I am a scientist and a chronic patient. Often it as simple as taking a step back, recognizing your audience, and having some empathy. We are all learning so we might work together toward a common goal. #patientchat |
#patientchat content from Twitter.